Sunday, July 30, 2017

Transabled

An able-bodied friend and I recently discussed the swirl of issues surrounding transgender people, spurred by the President’s sudden tweeted edict banning transgender volunteers from serving in the military. My friend expressed mixed thoughts on these matters, most of them based on the fact he just couldn’t identify with a person feeling they were somehow born into a body of the wrong sex. I replied that I too couldn’t entirely relate to the emotional state and cultural pain experienced by transgender folks, but my feelings should have no bearing on issues of fairness and equality. If all people are indeed created equal, any person's standing as an equal should not rely on my ability to fully grasp the intricacies of their circumstances.

As those thoughts turned into words and left my lips, the realization hit that in many respects I can identify with at least some of the feelings I expect transgender people experience. I’m in no way equating my own situation with theirs, but thanks to Creeping Paralysis the inner me is now almost entirely divorced from the body in which it exists. I’m not transgender, but I am transabled.

My concept of “me” is still that of the wiry six-footer that I used to be, the mannish boy who reveled in meandering strolls through the city, long-distance swims, a vibrant social life, and a full tapestry of sensual and tactile delights. The self I hold dear bears no relation to the embodiment of decrepitude that confronts me whenever I glance down and take a gander at the frame that sits in my wheelchair. The image staring back at me when I muster up the courage to roll up to a full-length mirror and take a peek is a complete stranger, at least from the neck down. With its bloated belly and ravaged limbs, that thing in the chair is most emphatically not the me that dwells inside of it. The old me lives on, cocooned in my heart and soul, trapped within a penitentiary of increasingly useless flesh and bone.

Though I try my best to quiet the frenzied feelings engendered by this gaping disconnect between body and spirit, at times there is simply no denying the emotional tempest raging within. Confusion, anguish, sadness, a gnawing yearning for what used to be – negative energies all, especially when directed inward. And though I try my best to silence or at least contain them, these destructive emotions seek out seams and points of weakness through which to burst, like grasping fingers of flame blasting through an apartment building window, threatening a conflagration that will take down the entire edifice. Thus far my attempts at emotional alchemy, seeking to turn negative energy into positive, have helped neutralize the threat, but the potential for self-immolation always lurks within.

As a transabled person, I often find myself an alien on my own planet, a victim of a variety of discriminations. Outside the cozy confines of my home, there are bathrooms I can’t use, restaurants and shops that apparently don’t want me as a customer, and passersby to whom I appear to be invisible. Indeed, maybe even something worse than invisible, a threat, a reminder of the ephemeral nature of their own sense of normalcy, a not-so-subtle hint that the supposedly solid foundations of their lives are in fact made of nothing more than gossamer.

The New Testament warns us to judge not, lest ye be judged. As members of a society increasingly riven by social and political divides – largely manufactured by would be puppet masters who seek to gain wealth and power by exploiting the very fissures they have created – it should be contingent upon every individual to live those words as a matter of personal and national survival. It’s far past time to reject outright the prefabricated outrage bombarding us and not fall prey to manipulators who have nobody’s good at heart but their own. We are all in this together, black or white, gay or straight, abled or transabled. If we allow the cracks in our society to further widen, we may all too soon find out what lies at the bottom of the abyss.

To my fellow transabled people I can only offer the same advice that I try to follow myself; make every effort to channel the despair and outrage you feel over being trapped in an increasingly unrecognizable body into some sort of positive force. As the great Johnny Lydon stated, anger is an energy. For your sake and the sake of your transabled brethren, make every effort to direct that energy outward, to vent it in some sort of constructive way if only to not let it combust within you. Cry out against a multiple sclerosis status quo that has made treating but not curing somehow acceptable, confront a medical industry that obscenely sees us first not as patients but as consumers, and offer comfort and understanding to those similarly afflicted.

To the transgender community, I tender my support, as somebody who is now experiencing the turmoil of being transabled. Although we may not live in the same house, I believe we might reside in the same neighborhood. I didn’t choose my circumstances and neither did you. Stay strong.

Celebration-Elizabeth Jameson
Created from MRA image of my brain.

My dear friend Elizabeth Jameson (click here), a disabled person who is far more comfortable with her imperfect body than I am with mine, recently gave the below Tedx talk. Her words and deeds perfectly illustrate the power of directing potentially negative energy outward, thereby forcing it into becoming something positive. Elizabeth’s MS journey found her turned into an accidental artist, transforming MRI images into thought-provoking pieces of fine art. My brain had the honor of being one of her subjects, and the prints she created out of my MRIs reveal that I have a couple of dancers jitterbugging away inside my skull. Thanks to Elizabeth, images of my brain have appeared on the covers of medical journals (click here) and textbooks (click here). Though MS has now rendered her quadriplegic, Elizabeth’s radiant spirit and message of everlasting hope come through loud and clear in this riveting and important talk. Enjoy…

(For those receiving this via email, you can view this video on the Wheelchair Kamikaze website – click here)

32 comments:

Wow. Thank you for posting this video. I am relatively new to disability, I've only been in my wheelchair for 6 or 7 years (you'd think I'd remember such a thing). MS is steering me in the same direction as Elizabeth, the thought of which offers me sadness and anger. Hearing her speak I see also the offer of celebration, as weird as that sounds. We all live in imperfect bodies. I'm not sure I can embrace "transabled," yet, but it has a better ring to it than "disabled."

Yes, Elizabeth is an amazing spirit. Sure hope I have half as much grace as she does if/when I reach the same point of disability. As for transabled versus disabled, I wouldn't force my new word on anybody. I suppose there is some disabled out there who are at peace (perhaps, Elizabeth included) with their bodies, so the new term wouldn't apply to all of us…

Thank you for so much - your honesty, your insight, your sharing of Elizabeth's talk, for coining the word 'transabled' which seems so apt, for solidarity with others who face a lack of understanding, for stopping me from being so pathetic about a bout of flu and a fall. I continue to find your blog inspirational. That 'wiry six-footer' is definitely alive and kicking (metaphorically or otherwise). Thank you.

Thank you for your comments. And you're very welcome. I do try to keep it honest, even though I know such honesty can at times be frightening, especially for those new to the disease, or less impacted by it. One of my fondest wishes is that the words on this blog will someday soon be reminders of a vanquished foe, like accounts of polio are today…

I am fairly new to MS as I was diagnosed just under 3 years ago. I loved that you stated that "anger is an energy", because I have indeed, been angry. I want to use that idea to help me out of my anger rut and put my anger to good use! I love reading your blog and really enjoyed Elizabeth 's Ted Talk. Thank you!

Sorry to hear about your diagnosis, and I'm sure you understand that anger is a very common emotion among people afflicted with terrible diseases. But anger is very much in energy, use it to fuel the fight, do your best to advocate for yourself and others, resistance is not futile…

I am so blessed that I found Wheelchair Kamikazee close to my diagnosis in 2009. The ideas and the philosophy are written beautifully. I am given words and ideas that are positive, but realistic. Thank you for another masterpiece.

I loved your essay and thank you for introducing us to your extraordinary friend. Her talk and her paintings were inspiring. I've had MS for 14 years and my progression has sped up in the last few years. Elizabeth's story shows us a creative and unique way to cope with progressive disability, or rather, transability.

Marc THANK YOU for another amazing article and sharing Elizabeth's TED talk .. WOW! Thank you for coining the word transabled, I also struggle to accept my imperfect body, especially now at the moment of purchasing my first wheelchair - :-( or maybe should be :-))?Thank you

Hi, thanks for the kind words. Sorry that you have reached the point where a wheelchair is necessary, but I think once you get over the mental hurdle of having to rely on one, you'll find that the wheelchair is very enabling, and will help open the world to you again. I don't mean to understate the level of that mental hurdle, as I had a hard time wrapping my head around the fact that a wheelchair was going to be a part of my life. But once I grudgingly accepted that fact, the chair allowed me to reaffirm my identity. Without it, there probably would never have been this blog!

Another great post, Marc, thank you for continuing to reach out to all of us, especially on those days when you are feeling down and out yourself. I really rely on your brain power and the balance you give to my thinking...especially about the stuff that makes us all so angry. Not to mention that, through you, the rest of us can tap into the amazing network you have developed - another great gift! Although I'm sure it isn't the kind of artistry you had envisioned for yourself, it is artistry on a whole 'nother level, and oh so valuable to all your online friends and followers.

Daphne, thanks so much for those very affirming words. Indeed, as the diseases roots reach deeper and deeper into my body and soul, maintaining the blog becomes incrementally more difficult. The rewards it provides, such as your words, more than make the effort well worth it. I'm especially glad that a sort of community has built up around the blog, as knowing there are others out there sharing the load does help ease the burden…

Great post stecker. I like that word transabled. My mom always told me to surround myself with intelligent people hopefully those years hanging out together helped me. Your body may be failing but your mind is sharp. I miss my friend. Keep writing. Gags

Hey Gags, thanks for dropping by. You know, of course, that you and your mom are/were/always will be two of my favorite people that I was lucky enough to cross paths with. Think of you often, even if I'm not in touch. I marvel at your beautiful children, and know that they are lucky to have you as a dad. As I am lucky to have you as a friend. As for my mind, well, yeah, it's sharp as an egg…

MarcThis is one of your best. I can so relate to everything you said. It actually allowed me to shed a tear. Transabled has now been added to the zeitgeist. It should be noted that you most eloquently mentioned both religion and politics. Nicely done! Permission to repost SIR!Jonathan (Hadji)

Hey Jonathan, yes, please to repost wherever you like. Would love to see "transabled" become part of the lingo. As for touching on matters of politics and religion, though I often steer clear, these days call for our voices to be heard. Glad you liked the essay, and thanks for commenting.

Thanks so much for commenting after your first visit to WK. I hope you find the rest of the blog informative/enjoyable. I've been writing it for over eight years now, and there's lots and lots of material here. I haven't updated the "Popular Posts" list in a few years, but that's probably a good place to start exploring some of my older essays… Thanks again, and may the road rise to meet you…

Marc,Although this research is not specifically aimed at MS (and our immune system is an issue), I thought you might like to see this..promising maybe. https://wexnermedical.osu.edu/mediaroom/pressreleaselisting/researchers-develop-regenerative-medicine-breakthroughPam

This is another brilliant post that you've generously shared with your readers/followers/fan club. I feel very lucky to have happened upon your blog and appreciate your candor, intelligence, gorgeous writing, fortitude, and the list goes on. Thank you WK!

As somebody who lives with both of these circumstances it's interesting to read this. I'm glad you have attained empathy and I am so sorry for the reason. A gender reformatting takes place in an attempt to feel 'right' and 'normal' within the self and the world. Physical disability from ms is not met with disdain and hate, at least not externally. Thank you for seeing what so many others will not.

What an absolutely remarkable woman. Thank you for sharing this, WK. I found you quite by accident and will be following and sharing your posts with our customers... starting with this! https://www.facebook.com/coolture/

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...